Self -management behavior in patients with cystic fibrosis

Self-management is being promoted in cystic fibrosis (CF). However, it has not been well studied. Principal aims of this research were (1) to evaluate psychometric properties of a CF disease status measure, the NIH Clinical Score; (2) to develop and validate a measure of self-management behavior, the SMQ-CF scale, and (3) to examine the relation between self-management and disease status in CF patients over two years.^ In study 1, NIH Clinical Scores for 200 patients were used. The scale was examined for internal consistency, interrater reliability, and content validity using factor analysis. The Cronbach's alpha (.81) and interrater reliability (.90) for the total scale were high. General scale items were less reliable. Factor analysis indicated that most of the variance in disease status is accounted for by Factor 1 which consists of pulmonary disease items.^ The SMQ-CF measures the performance of CF self-management. Pilot testing was done with 98 CF primary caregivers. Internal consistency reliability, social desirability bias, and content validity using factor analysis were examined. Internal consistency was good (alpha =.95). Social desirability correlation was low (r =.095). Twelve factors identified were consistent with conceptual groupings of behaviors. Around two hundred caregivers from two CF centers were surveyed and multivariate analysis of variance was used to assess construct validity. Results confirmed expected relations between self-management, patient age, and disease status. Patient age accounted for 50% and disease status 18% of the variance in the SMQ-CF scale.^ It was hypothesized that self-management would positively affect future disease status. Data from 199 CF patients (control and education intervention groups) were examined. Models of hypothesized relations were tested using LISREL structural equation modeling. Results indicated that the relations between baseline self-management and Time 1 disease status were not significant. Significant relations were observed in self-management behaviors from time 1 to time 2 and patterns of significant relations differed between the two groups.^ This research has contributed to refinements in the ability to measure self-management behavior and disease status outcomes in cystic fibrosis. In addition, it provides the first steps in exploratory behavioral analysis with regard to self-management in this disease. ^